Saturday, November 20, 2010

"Come to the edge, He said. They said, We are afraid. Come to the edge, He said. They came. He pushed them... and they flew." ~Apollinaire, Guillaume



Been a really weird kind of day.I don't often have days like these.I have spent the vast majority of it,trying to figure "it" out.Whatever the heck,"it" is.I sometimes have this overpowering,and frustrating to some, need to find reason and logic with most everything. When,in reality,the last few years,if they have taught me anything,is that there is often no reason and certainly no logic in most all that happens.I dissect and over analyze the big life stuff.And sometimes,even the little life stuff.Really a colossal waste of time.I seldom have found the answers to what I am looking for.

Today I have been on the edge.Sad and overwhelmed and then in turn, I am left feeling guilty for feeling sad and overwhelmed.Vicious,ugly circle.

I suppose,if you get right down to it,it started yesterday.At Zoey's Thanksgiving Feast.The anti-social part of me was going to skip the shin-dig altogether.I contemplated not even sending Zoey to school.Kinda of like this past Wednesday.When she had a field trip.To the local Pizza Parlor.To tour the kitchen,make pizza's and then eat the fruits of their labor.Tour the kitchen:What,in her stroller,with a view from 24 inches off the ground?Make pizza's:Yep,one handed,with,more than likely,the ingredients finding their way to the floor not the dough, and in the end,the teacher finishing it and then all of us pretending like she "did" it herself.Kind of like her art projects.I watch from the windows when I drop her off.I see them doing it for her.Their hands on her hands and voila,Zoey's,say,Pilgrim hat,finished.Finally,eat the fruits of their labor:Does that really need an explanation?So instead we went to Target.Much better choice.

Okay, back to the Feast.We went.Really wished we hadn't.Zoey sat at the table set up outside,in her special chair,as not to fall over sideways in a traditional chair.Threw her place mat.Threw her napkin and of course,it almost goes without saying,there was no eating.I joked as I gave her her tube feeds,but honestly,there wasn't anything funny about it.And Zoey,who is usually happy as a clam,at anything that involves people,was SO not happy.I have come to realize that she does not do well,outdoors,in crowds of people.She was the same at the Buddy Walk.Sensory overload.Strange,cuz she loves the grocery store and the afore mentioned Target.The Zoo,Disneyland,over crowded outside venues,not so much.So you know,we hightailed it out of there.I had had enough.And today I am feeling the aftermath.

Now before I go on,I need to preface this with the following:I KNOW how lucky Zoey is.I KNOW how lucky we are.If you know me very well at all, you know that I never take for granted,for one second, that our daughter has fought and found her way through many life threatening obstacles.No one needs to remind me of that.The great number of childrens funeral's I have attended over the last year and half,is reminder enough.The sad faces of my mommy friends who are missing their children,are reminders enough.What I am about to say,in no way diminishes my gratitude.I am grateful.I am blessed and lucky but today,I am also just plain sad.

Today I literally fought,to get a teaspoon of food into my child.A teaspoon.No exaggeration.I fought her again,as I tried to put a cup,a straw,and finally,a syringe of liquid,to to her lips.She cried and then,I cried.I had a child who nursed.I had a child who ate.Chemo and seizure meds put an end to that.Do you know how long we have been fighting this food aversion thing?Like 2 years.Gets old after awhile.

Today I saw my child frustrated beyond words as she tried to convey to me a need.Several needs in fact.What needs you ask?I have no idea.Still haven't figured them out.She threw herself back each time.Grunted and kicked over an over and then she cried.And then I cried too.

Today I tried,over and over and over again to stand my child up and get her to go from point A to point B.Like 15 inches I am talking,to no avail.Her legs buckled,she tried to drop to the floor and after a bit,I let her.

I have come to realize,as I sit and listen to other mom's and dad's talk about their children with Down syndrome,that Zoey's path and our path with her,is drastically different,then most.I seldom have anything to add to conversations of inclusion,reading programs,dance classes,sports teams and yes,even Christmas shopping ideas.And,looking farther out,boyfriends and girlfriends,jobs and living on their own.It becomes abundantly clear,as time passes, that the gap between Zoey and her peers,is getting wider and wider.As I watch them arrive to school on bikes with training wheels,playing with their parents iphones,discussing where they will be having lunch,mastering skills in record speed ... that gap feels like the Grand Canyon sometimes.Zoey will be 4 in 4 months and she doesn't have her pincer grasp for crying out loud.It is not that I do not derive joy in watching and listening to these other beautiful children,because I do,really I do. It is not that I dislike being part of the conversations either,I am just left with absolutely nothing to contribute.I feel like an outsider at times and sometimes,I wonder if even they,feel sorry for me.Just as they dread,that look of pity,from parents of typicals.

I kinda feel like giving up in some moments.

But I won't.I don't have it in me.

So today, after Zoey and I both had a good cry session,I just held her in my arms.She fell fast asleep and I gazed at her,studied all her features,in all their perfection and knew,that,we both will eventually find our way.It is getting there that has proven to be the hardest part.And today,seemed harder than most.

38 comments:

The VW's said...

Days like these are rough! I have them every couple of months, and it sucks! I think that we need to just release these feelings and then move on....but I too feel guilty when I am wallowing in my tears. But, seriously, reality definitely stinks some days!

I totally know the feelings you are feeling.....I can put Gavin and myself in all of the situations that you mentioned, and I can relate to how you were feeling as Zoey's Momma. I hear you, I get you, and I wish that I could give you a great big hug....but instead, know that you will be in my thoughts and prayers! Love and Hugs!!!

Rochelle said...

You could warn a girl to have a tissue handy, ya know.
Big hugs to you especially today.
Sorry it was such a crappy moment but, sounds like the day ended beautifully for you both!

Shelly Turpin said...

oh my dear friend. The plate you have been served is full.
For me,I feel like I live in two different worlds sometimes. I was at church on Wednesday and a friend was sharing how her 90 year old father had made this remarkable recovery - truly a miracle. He was full of fluid, they diuresis, he was on the vent, he got off, he is up and walking again. And I was glad for her - truly. But a small part of me wanted to scream that is what my baby goes through every day - but she never gets off the vent and walks away.
I think as Mamas we see the best in our kids and for our kids. But sometimes reality hits us and it bites - big time.
You are a rock and a wonderful support and inspiration to me. I am grateful for your ability to be honest and share part of your journey with us. Please accept a huge hug from me for the times when you just can't figure out what she needs, for the times when you want to fix it, and can't.
I for one don't pity you. You shine in my eyes.

ANewKindOfPerfect said...

You will get there, as we all will ... but as you said it's the getting there that SUCKS sometimes. I hate all the things you talked about. I hate getting art projects home that Emily clearly did NOT make. She does not color at all, much less make that pumpkin orange without going out of the lines! She did not connect the dots on her stupid pilgrim paper and then color it with bingo dot markers.

You are not alone. I know that doesn't help much. Like you, the quiet times when you stare at her beautiful perfect face ... it aligns the stars. :)

Kristin said...

Hugs to you and Zoey. Makes me even more grateful for our blessed lives.

Reagan Leigh said...

Heather,
It's times like these that I really wish you and I were not states apart. I SO know how you feel. I also know that you probably don't feel comfortable talking to me about this subject. But I do know how you feel. I think all special needs parents know how you feel. We all long for that little piece of "normal". It's best to just take it one day at a time. I know Zoey is going to continue to amaze you with her progress...just give it time! Sending you lots of love from Texas!!
Tera

Elizabeth said...

Oh, dear. My heart goes out to you. You know I've been in if not the exact same situations, pretty darn close. And sometimes I do feel it's best to just admit how much your life sucks.

My love and prayers and comforting thoughts go out to you tonight.

ABandCsMom said...

Just love, love, love on her. Hug her tight and kiss her often. She is Zoey. She is PERFECTLY Zoey.

Tina said...

I have tears in my eyes reading this, your honesty is something that I personally have held back inside of me, or should I say the reality of my situation is something I seem to push away very often, but you made me think of it again. Heather believe me but so many things you said made me think of my very own situation. Saira might not have gone through half of what sweet Zoey has but I do see her obvious delays more and more, and sometimes I wonder if I am alone when it comes to her progress in the so called "typical DS" group by which I mean those who haven't had any major medical issues to deal with. Saira refuses to try and stand on her own, she will just buckle up her legs and plonk herself down while all the others around her seem to have started walking, she's two and a half and I kind of took it that she would be standing on her own by now. I see others with DS who seem to be doing so much more in so many areas. Cognitively I also wonder about her, is she understanding anything? I am never sure, she can't express herself and I see her frustrations. I know Saira's hurdles might be on a different scale but I do get you. I have also acccepted the words "live one day at a time" but that doesn't mean there aren't some days that make us just a little bit sad, and I think we are allowed to feel it, but at the end of the day when we see our little ones smile, like the smile up on your post today, wow...well our worries seem to vanish for the moment.

Btw could you pls email me your address at christina.mitra@hotmail.com
Thanks

Laura Gilmour said...

Sensory overload is a difficult thing. I do not live with Zoey's other issues, but I understand sensory issues from personal experience. I have lot of difficulty functioning for a long period of time in a group of more than 3 or 4 people. At family gatherings, I prefer to go off somewhere quiet after the dinner. There's this water park I love in the city, but whenever I go there I get disoriented by the crowds and then I'm tired for days afterwards. I would recommend finding a quiet activity for Zoey after a short time of visiting with everyone. Maybe she'd like some music or videos off in a quiet room, just as I like my simulation games. She may be someone like me who prefers to see everyone a few at a time. I am sitting upstairs away from a group family gathering as I type this. And certain places just may not be fun for someone with sensory issues (e.g. Disneyland, Buddy Walk). I would not choose to go to a park as busy as Disneyland. I don't cry like Zoey, but I shut down and find it hard to talk and think in crowded places. They are not fun for me and never will be. My psychiatrist said to me once when I was wondering about missing out on what people my age were doing that as long as I was doing things I enjoy, I should be happy with myself. Zoey has many activities that are fun for her, even if they aren't typical 4-year-old activities. I love reading your site and watching this happy, charismatic little girl grow up. I hope this advice on sensory overload helps.

Jeana said...

I'm so sorry that you and miss zoey had a rough day. we've had a few of those, and they are definitely not an easy thing to come back from. I'm so glad that you posted this, it really helps to know that we are not the only ones that struggle with things. Feeding is hard...and according to our feeding therapist Kaelyn is a good eater. I just watch other kids chow down on a whole bottle of baby food, when it takes us 30 minutes to get 2 tbls in her. Thanks for reminding me to not give up, even when it seems like the only option.

Becca said...

Ohhhh, this is making me cry. I have no words, other than that you are an amazing mommy to that beautiful little girl. You put things in stark perspective, and teach me to never take things for granted. I am in awe of you right now and thank you for this honesty.

(Btw, I hate those teacher-led art projects, too, and am grateful for Sammi's private school having a policy of not creating the art for the children. I wonder if schools that do that know how they're making the parents feel? When she was too young to do art projects herself, I was so happy when they did hand or foot prints. At least I knew those were hers!)

(((Big Hugs!!!)))

Jamie said...

I feel the exact same way... I proudly display these teacher made art projects..just becasue they are colorfull and I can feel some sort of normalcy. Food Adversion is VERY old in my house as well. Its certainly something I give up on quickly when I try it.ur lucky you got a TEASPoON! Madie is just four years old last month and still way behind her peers..(and bottle fed)*sigh. I know I know.Like you said "you just dont have that giving up in you" We keep on movin. with our perfect little Girls. ur going to make me cry again! lol
((hugs))

SECRET PEPPER PERSON: said...

Having a 17 year old I know what it is like when "The Revelation of The Widening Gap" hits. The highs and lows of parenting children with special needs are often extreme. When you are on the Mountain top the view is spectacular. When you're in the valley it's often hard to see the sun.

Kristen's mom said...

Kristen wrote her own book. I was there with her every single time she would put something else on the page. I tried to guide and steer her one way or tried to get her to put something on the page that I wanted on that page and at the end of the day it was her that was tapping on the keyboard, not me. We did early intervention, preschool, kindergarten, and then school. But it was still her way, half a day, twice a week, whatever she could handle. She plain didn't like it. She hated it. She would take it upon herself to either hide on the school bus, (and was left on that bus for hours, because the bus driver forgot to get her off) Any chance she had she would sneak out of class, One day I found her walking toward home. School was 5 miles from home and she was almost to a four lane, busy road when I found her. It wasn't worth it. I took her out of school and kept her home with me. She loved it and I loved it. I had my critics, some of them family, but it didn't matter. I listened to my heart, and to her heart. And the book was written and it is a beautiful book. I can say that it didn't come without a lot of tears, worry, heartache. I had it all. I always hoped I was doing the right thing. Now I Know I was and whatever you do will also be the right thing. Zoey is Zoey. She will always be Zoey, the girl we all love and adore. No one, that matters, will ever look at Zoey and determine her value on what she can or can't do. She touches lives, she changes lives just by her being Zoey and to me that's is quite enough.

Anna said...

I've been reading your blog for a while and you never cease to amaze me with your strength!!! The counselor I saw while I was getting divorced told me once that it was OK to cry and feel powerless some days, you're only a human... I was mad at her at the time and felt like I could weather any storm without breaking down, but now I see the wisdom of those words... Give yourself credit - you have a lot on your plate and allow yourself to fall apart, sometimes...
Love and hugs, Anna.

Karol said...

As I read your post I am torn. I cannot relate, yet I can. I cannot relate from a DS perspective. Laynee was one of those DS kids who did everything fast. Walked early, communicated her needs beautifully with sign, ate like a soldier, climbed on anything she could. Sometimes I wonder if she did things so fast simply because she had so little time.

But I can relate with Moise. My beautiful boy for whom nothing comes easy. He's 10 next month, goes to school with kids who are 8. The gap between he and his peers is ever widening. As for his other "delayed" friends, well, they are just that "delayed," he is not "delayed" he is retarded. GASP.... I said the word. Yes my son is retarded, I could sugar coat it and find another word for it but it would not change the facts. There is no joy in going to school events to watch as all the other kids grow and blossom while my son does not. I've learned that it's ok. To those who think that maybe I am less of a mother for not being at all the "look how great my child is" functions, I say "let's trade shoes for awhile."
I know that you appreciate Zoey. I won't even say "cherish her, life is so short" because I know that you know that. I also know that even though our children can be gone from us in one final breath, long before we are ready, the time that we have with them can be filled with much heartache and frustration.
Hang in there.

Sweet Pea's Mommy said...

Hugs to you both!!!!

Joyce said...

oh how this brings tears to my eyes too Heather. I can just picture you and sweet Zoey having a teary fest. it is so hard at times. i learned a long time ago to allow myself the weak moments knowing that day will surely follow night and with the rising sun a new day is born. You and Zoey will be like me and Sarah, you find what works for you and adjust life accordingly.

Look at the picture Sarah just posted with the three gals we met at early intervention. I used to be so envious because none of them had any health problems. They learned at a much faster pace than Sarah and then just when I saw progress, she would end up in the hospital for weeks and we would be playing catch up again, only she never did.

Today, they all speak in complete full sentences. Sarah still just uses words mostly. They navigate public transportation. I don't think Sarah ever will. Look at where they work. The job program that placed all of them won't even try with Sarah because she misses too much work when she is sick. Two have boyfriends. We are still working with that school girl crush on a married man. But when they walked into the store, none of that mattered. Sarah was just so happy to see them. In her space. So I just enjoyed the moment and said a little prayer of thanks that we have this store to hang out in. Somehow it all comes together.

Hugs, hugs and more hugs to you dear friend.

Runningmama said...

I am sad that you have to feel this way...you and little Zoey have been through so much already. She's beautiful, but I know despite all of her wonderfulness, some days are just plain HARD. Sending hugs your way and shedding tears for you.

Devon said...

Perhaps Zoey was given to you for that precise reason--because you don't have it in you to give up. You are strong, sweetie. I know, though, that you carry the weight of the world on your shoulders, and I know how heavy it gets. Wish I was there to help you with it, even just over a lunch or a quick trip to starbucks. Hugs to you, sweetie.

Scrappy quilter said...

My heart aches for you. I know how you feel. I am starting something new tomorrow (Monday) and this Monday it's for you. I wrote it on Friday. Please don't forget to stop by and read it. Hugs and love

Denise said...

My goodness you have received some seriously long comments from this post. Look how loved you are!! Sorry that mine won't be this long as we have covered most of it on the phone but I was just wanted you to know that I was thinking of you and you know that I think you have every right to feel bad once in a while!! I know we all do it. We can't look at the bright side all the time. But I just know that the smile on Zoey's face has to get you through so many tough moments!! Hope to be able to get together after Thanksgiving with the Rugg's and Claire's family.

Anne and Whitney: Up, Down and All Around said...

sending hugs to you knowing that you are probably already feeling better just for getting all of that out and it was so generous of you to be so honest and share with all of us! thinking of you :)

Claudia said...

Awwww friend. If I only could come over to give you a big hug. Or a good cup of dark hot chocolade. So sorry for those feelings...i hope something will lighten up the day .

Anonymous said...

OH dear I'm so sorry Zoey & you had an "out of sorts" day. As you know, I have no personal knowledge of DS, etc. but I DO KNOW that you are a wonderful mother, Zoey is beyond amazing and she truly is.. gonna do it her "own" way and in her "own" time. And, Heather it is really amazing that you do not have these days more often, but then I DO KNOW that you are a strong, loving,caring mother to Miss Z as well as 5 other children
who range from 23 to 3.

And please know that you are admired and loved by many.

Love & Hugs
Aunt Bluebelle

Anonymous said...

Heather-Hello! I have been following your blog for a long time and I am going to leave me email as I would like to speak to you regarding a few things. I have a 3yr old little boy Ethan with Down Syndrome and Epilepsy. He reminds me so much of your little princess that I have some questions. I know how you feel we have those same days I am sad to say!!!


nmills25@verizon.net

Melissa M said...

I'm so sorry you were (are maybe...) having a hard day. You are an amazing mom to an amazing little girl. She has oversome so much, and still smiles! She brings a smile to my face everytime I see her. I really hope its works to get to meet you this week. I would really love to give Zoey a big hug!

Victoria Strong said...

I can relate to so much of what you say Heather. And it is okay to have those tough days. It is okay to cry and feel frustrated and feel sad. It doesn't mean you are ungrateful. It's tough -- really tough. I am sending you hugs!!!

Cole said...

sigh...I think we all have those days. Abby is so far from walking as well- that legs buckling thing still perplexes me. We have the feeding issues too- for me that/s when our lack of typicalness hits amongst our friends. Out daycare staff wonder why she has to be fed, why she has to use a special straw/cup- I know that's not the same at all as having a feeding tube- I just mean that I can identify with your feelings about trying to make a not-so-typical thing appear like we're just going with the flow, no big deal and then hitting the roof with it later in private. That was nursing for us, no matter how hard I tried it never got easy. I see other parents with what looks like easy and wonder why we didn't get easy. Some days you just have to vent in order to get back to the place of appreciating the "Zoeyness" as someone else put it. Hugs- you are an inspiration- even when you don't feel quite up to it.:)

Cammie Heflin said...

Heather, my dear friend, you know how I can relate to this post. Completely except for the Chemo thing. We've been through the multiple hospital stays with several nights of very scary stuff. I look at several other little girls with DS around here that love to run around and play with each other, feed baby dolls, share cookies and laugh with each other. My Addy just looks at them and has no clue how to interact with them and she is older by a few months. You call me anytime, our conversations are perfect for both of us. I LOVE YOU!

Angi said...

I cannot compare, now or ever, our lives are very different...you take the good with the bad and I would NEVER EVER JUDGE a bad or confusing day for you, you are ALLOWED to question and be FRUSTRATED and ask why...your path has been chosen for you and though I don't go to church I DO believe in God and for some unknown reason he has chosen all of this...you will work through it day by day...he did give Zoey that little smile to get you through the worst of days:-)Love to you!!!!

Anonymous said...

Sending lots of love and blessings your way. God has a plan for everyone.

Googsmom said...

Heather, I. LOVE. YOU!!!!!!!!

I love Zoey!! {{{{HUGS}}}}

Believe this: YOU, yes YOU and Zoey have helped me in more ways than I could ever express to you. More ways than you'll ever know. YOU are more of a rock to me than anyone else. For that, I am so Thankfull!! Again, {{HUGS}}

Kelli said...

Sometimes there just isn't anything to say but to pass along a HUG...xoxoxoxoxoxoxo.

TherExtras said...

I know you are already past this. My approach tends to be practical but not without supportive sentiment.

The sensory overload reason seems to be overused, to me. Maybe she just prefers shopping to observing animals or their caricatures?

I have long resented pretend involvement in preschool activities. I'm with you there. I would want an activity designed to actually include her abilities and perhaps layer on some learning.

For other children who refuse to weight bear/walk, I would design a slowly graded standing program - in a piece of equipment.

I have several links to posts on standers in my middle column. Along with a whole series on eating/feeding - where the best suggestions came from parent commenters.

Barbara

Ian Marrey said...

Understood every word. :-(

Carey said...

Oh Heather - you ARE allowed!!! Just don't lose your sense of humor. I will tell you, regardless of how and when our kids meet their milestones, we will still always share so much more. I even share that little anti-social streak you speak of. Making jokes about changing my almost 5 year olds diapers, or finding the irony of watching her "singing" program at school doesn't make me many friends. I'm pretty sure I just make the "typical" mom's uncomfortable ... like how can she find humor in that? Well, b/c I have to. Nobody said it was going to be easy, but heck, nobody said it was going to be this darn hard either! So dry up those tears, put on your big girl panties and keep going. You can do this!!!